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Sunnybrook case raises question of who decides life support

Toronto Sunnybrook physicians go to Supreme Court to get answer to question: who decides when to withdraw life-sustaining treatment?

Hassan Rasouli, right, is attended to by his daughter Mojgan, left, and wife Parichehr Salasel, centre, at Toronto's Sunnybrook Health Sciences Centre. After surgery for a benign brain tumour at Sunnybrook, Hassan developed bacterial meningitis, which extensively damaged his brain. (CARLOS OSORIO / TORONTO STAR) | Order this photo

Hassan Rasouli, an engineer and Iranian immigrant to Toronto, before he had surgery for a benign brain tumour at Sunnybrook Health Sciences Centre and contracted baterial meningitis, which severely damaged his brain.

By ROBERT CRIBBSTAFF REPORTER

Fri., Sept. 28, 2012

A mysterious harbinger appeared in the skies two years ago as the Rasouli family packed to leave their native Iran for a new home in Toronto.

Only days before their scheduled flight, debris from an erupting Icelandic volcano floated into the atmosphere, shutting down air travel across Europe.

With planes grounded, Hassan Rasouli, a husband and father of two, searched for hidden meaning.

“Maybe something is telling us not to go,” he nervously suggested to his daughter, Mojgan.

“Oh Baba, don’t be silly,” she reassured him.

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Secretly, she felt the same unease.

Their instincts were prophetic.

What awaited the Rasouli family in Canada would change them in unimaginable ways.

And it could change Canada as well.

Within months of arrival, Hassan Rasouli would get up one morning, board a bus, walk into Sunnybrook Health Sciences Centre for surgery, and end up where he remains today — ventilated and artificially nourished in a hospital bed.

His fate would trigger a Supreme Court of Canada legal battle that promises to bring unprecedented new clarity to a crucial, unanswered question in this country: who should decide when a life is no longer worth saving?

Sunnybrook holds a uniquely controversial place in that debate.

The hospital has been ground zero in a series of embittered disputes between doctors and patient families over end-of-life care.

At least four families have taken the step of legal action against the hospital and its physicians in the past three years, alleging doctors discontinued — or attempted to discontinue — life-saving treatment for loved ones who they insist wanted a chance at life.

The conflicts have hinged on a highly charged Sunnybrook argument that even many in the medical profession find distasteful: that physicians should have the unilateral right to end life-sustaining treatment if they see no medical benefit.

It is not a right typically conferred upon — or publicly demanded — by physicians in Canada.

Had Rasouli ended up in a different Toronto hospital, the likelihood of a Supreme Court legal battle would have been infinitesimal, say medical insiders.

Seven medical professionals at four of Toronto’s other major hospitals all say privately that they would never have taken such an inflexible stand by demanding unilateral decision-making powers.

This is modern medicine’s minefield.

“We have a serious lack of clarity with respect to the legal status of unilateral withdrawal of potentially life-sustaining treatment,” says Jocelyn Downie, a leading health law expert at Dalhousie University and author of Dying Justice.

“Some courts have said yes, some have said no, and some have said, ‘It’s really uncertain.’ That’s a terrible state of affairs.”

Intractable end-of-life disputes confound physicians, judges, bioethicists and the public at large, because they pull us beyond the well-charted comfort zone of medical judgment and clinical decision-making.

When a life is teetering, scientific evidence can be forced into uncomfortable negotiations with personal conviction, religion and faith.

The Rasoulis, for example, are devout Shia Muslims. For them, life is a gift from God. Hassan, if he could speak his wishes, would choose to live on regardless of the medical diagnosis, his family insists. To choose otherwise on his behalf would be an affront to his beliefs and values, they say.

Woven into that complex tapestry of end-of-life considerations are the ballooning medical costs associated with keeping patients on life support for months or years.

Neither side holds a trump card. Neither is believed to possess of all the relevant information.

When consensus proves elusive, both sides may take their respective arguments to an independent, third-party arbiter in Ontario called the Consent and Capacity Board.

That model was abandoned in the Rasouli case.

The Sunnybrook physicians appealed two lower court rulings directing them to appear before the board for an independent adjudication, arguing that the medical decision is theirs to make independently.

The Supreme Court will now be the judge of that argument.

“In our society, even mass murderers and serial killers are entitled to fair trials and the full range of protections we call due process,” says Mark Handelman, a former vice-chair of the Consent and Capacity Board and a leading lawyer on end-of-life cases in Ontario.

“Why not a person whose only crime was to become sick and vulnerable?”

The Sunnybrook physicians named in the Rasouli case — Drs. Brian Cuthberston and Gordon Rubenfeld — declined requests for comment on this story.

In court documents, they argue for the right to make treatment decisions based on their view of a patient’s best interests.

“Where a treatment offers no medical benefit to a patient, there can be no legal justification for requiring the treatment to be offered to the patient,” reads the physicians’ factum to the Supreme Court.

“In Mr. Rasouli’s case, there is no reversible illness from which he can or will recover, life-support serves no medical purpose. Moreover, he cannot experience any personal benefit from life-support measures in prolonging a life of which he is now unaware.”

Dr. Robert Fowler, a Sunnybrook intensive care physician currently caring for Rasouli, agreed to respond to general questions on end-of-life care without addressing the details of any specific cases.

“There are rare cases, rare patients, that beyond any kind of shadow of a clinical doubt in my mind, we would say, ‘We don’t have therapy that will bring this person back to a state that would give hope,’ ” he says. “For certain kinds of decisions, I think the weight has to go to the medical experience.”

Sunnybrook’s place under the microscope of end-of-life conflicts has emerged as a surprise to physicians at the hospital, he says.

“It does seems like, holy cow, why is it all about us? These kinds of things happen everywhere. From my own experience here, I’ve never heard anyone say, ‘Let’s push this agenda,’ or, ‘Let’s take this on as a cause.’ ”

The position of Sunnybrook physicians goes against the standard life-and-death decision-making process in Ontario, say many medical and legal experts.

Two years ago, Toronto lawyer Barry Swadron filed a lawsuit against Sunnybrook on behalf of a woman who alleges medical staff changed her ailing father’s status to “do not resuscitate” without her consent, and then sat and watched his final breaths as she pleaded with them to save his life.

“I’ve had at least a dozen people call me over the past two years with similar incidents at Sunnybrook,” Swadron says. “Sunnybrook appears to be an island unto itself. The doctors and staff seem to think they’re not subject to the procedures that govern other hospitals in Ontario.”

Law professor Downie, who is used to carefully weighing the arguments of each side and debating their respective merits, has a surprisingly categorical view of the Rasouli case.

She sees the claims of the Sunnybrook doctors to unilateral powers as “indefensible.

“It’s a very common position to get from physicians. They believe they have that authority and they believe it is a threat to their professional autonomy.”

But despite the David and Goliath imbalance — an immigrant family with few resources taking on one of Canada’s largest hospitals and two of its most prominent intensive-care physicians — the Rasoulis will win, she predicts.

“I have never found the legal arguments presented in support of unilateral (decision-making by doctors) to be persuasive. Sometimes you can see the other side. On this one it doesn’t make sense to me.”

He complained to his family doctor of slight hearing loss in his right ear in August 2010.

That triggered an MRI, which revealed a benign tumour.

“When the results came back he put the paper on the shelf in the kitchen and went into his room,” recalls daughter Mojgan, a 29-year-old graduate student in urban studies at the University of Waterloo.

“He didn’t say anything. When my mom came home and read it, I remember she was crying. She’s a doctor and she knew it was a brain operation. For days, everything was silent in the house.”

The operation went perfectly.

The aftermath did not.

“After the surgery I kept saying to the doctors in charge and the nurses in charge, ‘Why his situation got worse instead of having improved,’ and they told me it is normal after the surgery,” says Rasouli’s wife, Parichehr Salasel.

“It was not normal. But they let him to reach to this point, getting hospital infection which lead to his coma status, and do not try to prevent this simple hospital infection.”

Within days, Rasouli would be lying in a coma from bacterial meningitis acquired at Sunnybrook.

“My mind was empty,” Mojgan says. “I was in shock.”

Doctors were brusquely matter-of-fact with their explanation, she alleged in an interview.

“They just said, ‘Sorry, he got meningitis from the operation. It happens. We do not know the source. But do you really want your father to stay like this? He’ll never, ever wake up.’ My mom collapsed on the floor.”

Doctors have insisted in court records that Rasouli’s meningitis has left him with “permanent, severe and diffuse brain damage.”

An internal Sunnybrook policy document on “Addressing Communication and Disagreement” in end-of-life situations lays out a series of steps medical staff are to take in resolving conflict with patients and their families.

In cases where physicians determine life support will not provide “medical benefit” or “hope of recovery or improvement,” it “should not be offered,” the policy says.

That advice is out of step with Ontario standards, says Dr. Neil Lazar, site director of the intensive care unit at Toronto General Hospital and a leading Canadian advocate for patient-centred health care.

Sunnybrook’s Fowler defends the policy, saying it makes sense not to offer treatment deemed by physicians to be medically pointless.

“I think the logic is, if you don’t think it’s medically justified, you shouldn’t do it,” he says. “I wouldn’t argue with that at face value. I think a lot of hospitals probably say, ‘Oh gosh, this is a tough area, we don’t really have a great policy on it.’ ”

When families or patients demand heroic measures such as CPR to sustain a life beyond medical help, physicians are justified in holding firm, he contends.

“When there’s no more therapy we can hope to provide and someone is in the process of actually dying a cardiac or respiratory death, if it’s not bridging to anything, then it doesn’t make any medical sense to put a patient through it,” he says. ‘I think it’s not right to use CPR to replace the notion of last rights.”

The optimal outcome in cases of conflict with patients, the Sunnybrook policy says, is resolution “via consensus.”

Nothing close to that happened in the Rasouli case.

In a meeting with Dr. Brian Cuthbertson on Nov. 21, 2010 — about six weeks after the surgery — it became clear to Mojgan and her mother that the hospital’s medical team was resolved to cease heroic measures for Hassan.

They both recall the conversation the same way.

“He was very rough,” says Mojgan. “He said, ‘We do not need your consent. We’re just informing you that this is our decision to remove his ventilation.’ I couldn’t believe they were going to do this.”

Cuthbertson declined comment through his lawyer.

A few days later, the family was told Hassan would be removed from his ventilator and moved into palliative care, where he would not be offered aggressive care if he suffered an arrest.

“I stood in front of his bed (and) said, ‘First kill me, then kill him,’ in front of the all (the) nurses,” Salasel recalls. “So Dr. Cuthbertson agreed to continue ventilator support for a further two to three weeks. But he told me, ‘No treatment and no CPR.’ ”

What followed, Mojgan and Salasel allege, were months of pressure from doctors threatening to cease aggressive life-sustaining treatment without their consent.

Salasel, as Hassan’s substitute decision-maker, consistently refused the requests. A trained physician in Iran, she believed he continued to show signs of consciousness and improvement.

“I was surrounded with all strangers who forced me to accept their plan, and let my children’s father die so simply,” Salasel says.

At times, she relied on dramatic, 11th-hour moments of ingenuity to delay hospital plans to remove Rasouli’s life-saving care.

When Salasel was told in January last year that ventilation would be removed, she devised a stalling tactic: she offered her husband’s organs for donation.

The process of arranging the donation bought her a few days — enough time to find a lawyer and begin a legal proceeding that put a temporary freeze on the physicians’ plans to remove ventilation.

The Sunnybrook physicians declined to take their case to the Consent and Capacity Board (CCB) tribunal.

In fact, the Rasoulis say doctors never told them about the CCB option.

At the Ontario Superior Court, they argued they did not need consent from the family or a tribunal order to withdraw treatment when they believed there was no medical benefit.

Not so, said Madam Justice Susan Himel, who referred the Rasouli dispute back to the Consent and Capacity Board.

Doctors instead took their case to the Court of Appeal, where it was again rejected in June of last year.

“If (the family’s) consent is not forthcoming, the (doctor’s) proposal must be referred to the (Consent and Capacity) Board,” the justices ruled. “Most doctors, we believe, would see (end-of-life disputes arbitrated by an independent board) as a good thing, rather than viewing it as an impediment to their professional independence and autonomy.”

Instead of appearing before the CCB, they took their appeal to the country’s final legal authority — the Supreme Court of Canada.

“The applicants’ position is that consent in such circumstances is not required even if the patient will die when the treatment is withdrawn or withheld,” reads the physicians’ memorandum of argument to the Supreme Court.

“It is an issue of unquestionable and pressing national importance. If the Court of Appeal’s decision stands, patients and their surrogates will be legally entitled to insist upon receiving an array of futile treatments.”

Initially, his diagnosis by Sunnybrook doctors was “permanent vegetative state,” described as complete and irreversible unconsciousness.

In a May motion hearing before the Supreme Court to quash the case, Hodder told the court that Rasouli’s medical improvement “so radically changes the factual matrix before the court, that the court should not rule on a set of facts not properly before it.”

Harry Underwood, the physicians’ lawyer, rejected that argument, saying Rasouli’s medical condition “is merely an incidental fact which has no bearing on what the appellants ask this court to find. We ask this court to determine the legal framework that is to apply whenever courts are asked to decide whether doctors are obliged to offer life support.”

It’s clear the Supreme Court wishes to proceed with a ruling on the Rasouli case given its overwhelming public interest.

What’s less clear is whether Sunnybrook physicians would still unilaterally remove life-support should the court grant it.

In an interview this week, Hodder said his written questions to the physicians’ lawyers asking about their intentions with Rasouli’s care have gone unanswered.

“I’ve asked clearly, given the change in status, can you now say you have any intention of withdrawing life support? Why are we continuing with this? They have not responded . . . It strains credulity to think that (Rasouli’s physicians) would still wish to withdraw life support from a human being who has some degree of consciousness.”

While patients in a permanent vegetative state (PVS) have a “4 per cent or higher” chance of regaining some awareness, those in a minimally conscious state have a 33-per-cent chance of making a marked recovery, says the family’s factum to the Supreme Court.

“(Minimally conscious state) is a grey area in between. Does it change the treatment? When patients are unable to control their actions, thoughts, responses, vital functions because of such severe brain injury that they need to be on life support in order to breathe and have their heart beat effectively, I would say that treatment hasn’t changed.”

Beyond legal arguments, Mojgan says her father’s return from a permanent vegetative state raises a far more fundamental question: how much do doctors really know when they decide a patient is beyond medical help?

Had Sunnybrook physicians been allowed to act unilaterally from the beginning, her father’s improved diagnosis would never have been discovered, she says.

“Doctors make mistakes. And we, his family, know him better than anyone. The beliefs of the family and the patients should be valued. It shouldn’t be their decision to make alone.”

In their factum to the Supreme Court, the Sunnybrook physicians appear to soften their position on whether there is a role for independent oversight of their decisions.

While continuing to insist the CCB “has neither the jurisdiction nor the expertise to conduct a hearing into the applicable standard of care,” they contemplate for the first time a role for the courts.

In end-of-life disputes where resolution can’t be resolved, a substitute decision-maker or physician “should be able to seek an immediate determination from the court as to whether the standard of care requires the physician to continue the disputed medical treatment.”

He studied to be an electrician at the university where Salasel was a medical student.

In order to get close enough to meet her, he took a job in the medical school cafeteria.

The strategic courtship ploy worked like a charm.

He sought the permission of her brother, who was also attending the university, to meet her and date.

While still students, they married.

He was 28. She was 22.

They enjoyed a middle-class life that provided Mojgan and her brother with extensive travel across Europe, exposure to the arts and the history of ancient Iran, and deep religious convictions.

It a world away from the hospital room where Salasel now spends every evening after studying English during the day.

She sits next to the silent Hassan, now 60, separated from him by the vast distance created by his condition.

She speaks to him gently as she props up his head in her hand. Sometimes she and her children — there is also son Mehran, 24 — read to him in their native Farsi tongue. She talks about her day, what’s happening with the kids.

Sometimes, they say, Hassan even smiles.

Welcoming a visitor this week, he raised his fingers on request from his family. He made eye contact. He made a peace sign.

At one point, one of the machines attached to him began beeping loudly, a signal that phlegm had gathered in his throat. A nurse arrived to plunge a clear plastic suction tube into his throat while his face grew red, saliva spilling from his mouth.

“It’s hard,” Mojgan whispers.

While his features are contorted and his gaze sometimes distant amid the sound of heavy breaths sustained by machinery, he is there, his family insists.

“He can understand us, feel us,” says Mojgan. “He is in a room of glass. He’s just looking to find a way to communicate.”

In their Supreme Court factum, the Sunnybrook physicians say the family’s optimism is deeply felt but ultimately unjustified.

“It is clear that Mr. Rasouli’s family loves him very much, and that they desperately wanted to believe that he was conscious and improving,” it reads. “Unfortunately, it is also clear this coloured their interpretation of his behaviour.”

If he could communicate, what would he say about the state he is in? What would he want?

As the question is asked, Mojgan and Mehran turn to their mother.

“He would want to live,” Salasel says.

The daily costs of providing heroic measures in desperate cases like this pose wrenching questions for doctors and hospital administrators.

A patient in intensive care can cost the health-care system about $2,000 a day.

Rasouli has been in intensive care at Sunnybrook now for nearly two years.

But the economics attached to his family’s wishes have never emerged as a key argument in court proceedings so far.

Lawyers on both sides have stuck to the medical facts.

Judges didn’t probe.

The silence was conspicuous.

“While resource allocation issues are a policy debate not relevant to treatment decisions for individual patients, it’s a policy debate no one is having,” says former Consent and Capacity Board vice-chair Handelman.

In their Supreme Court submissions, the Sunnybrook physicians argue for the first time that protracted end-of-life care impacts “the allocation of scarce medical resources in the Canadian medical system, for the cost associated with providing treatment without medical indications risks depriving others who might benefit from medical intervention.”

Downie agrees health-care resources have to be protected. But not at the cost of empowering doctors to unilaterally pull the plug.

With Hassan the sole breadwinner in the family prior to his operation and a legal battle quickly depleting their resources, they’ve turned to the Internet to help raise funds from the public.

Only about $4,600 of the $90,000 goal has been gathered to date.

Mojgan’s deep brown eyes well up as she speaks of the battle behind and the one still ahead.

“From the very first week, doctors wanted us to lose our hope,” she says, sitting in a coffee shop near the hospital, where she journeys most days in between writing her university thesis, balancing the fight for her father’s life with trying to begin her own.

“They said he’d never wake up. He’d never regain consciousness. They said we were wasting our time talking to him and encouraging him. They misled us.”

She pauses and surveys the steady stream of people filing in and out.

Her family’s nightmare isn’t theirs alone, she says.

Not anymore.

“Doctors want to make their decisions without your family’s consent,” she says. “This will affect all Canadians.”

Robert Cribb is a 2012 Atkinson research fellow who has spent the past four months examining how Canadians face the end of life. This story is part of a series that continues over the next three months.

Several other conflicts between families and physicians at Sunnybrook have bubbled over into formal proceedings in the past two years:

• Joy Wawrzyniak and her father, Douglas (Dude) DeGuerre, made it clear to Sunnybrook physicians that he wanted life-saving treatment in case of a medical emergency when he was a patient in 2008.

His medical chart indicated that wish.

But doctors and medical staff overruled those wishes without consent or consultation and watched him die without any attempt to save his life in 2008, Wawrzyniak claims in a 2010 lawsuit still before the courts.

As he lay breathing his strained final breaths, Wawrzyniak was at his bedside listening to whispers among the medical staff.

“He’s DNR,” she heard a nurse tell a colleague, the claim states.

“Upon hearing the whispered words, (Wawrzyniak) shouted: ‘He’s not DNR, he’s a full code. I am his daughter and his power of attorney for care. Please help my father,’” says the claim.

Dr. Martin Chapman, who also cared for Rasouli, told Wawrzyniak, “This is for his own good,” the suit alleges.

In a desperate final attempt to save him, Wawrzyniak picked up the bedside phone and dialed 911 with her right hand while holding and squeezing a respiratory bag in the other hand to help her father breathe, her statement alleges.

“Nobody will come,” Chapman told her, according to the statement.

The allegations have not been proven.

Sunnybrook and its physicians have repeatedly denied requests for comment on the case.

A statement of defence filed in court denies the allegations, saying DeGuerre’s power of attorney advised physicians to withhold or withdraw treatment that would “serve only to artificially prolong the dying process.”

On the day he died, Chapman recorded this note in DeGuerre’s chart, “Further aggressive therapy . . . would almost certainly not provide any lasting benefit to his health, only increase suffering,” the statement says.

Dr. Donald Livingston later added to the chart, “Agree — in this patient resuscitation represents a futile therapy without demonstrable benefit.”

In addition to her ongoing lawsuit, Wawrzyniak filed a complaint against her father’s physicians to the province’s College of Physicians and Surgeons. The college decided to take no action against them.

But a provincial appeal board which reviewed the case has sent the decision back to the college for further consideration.

The college’s decision was “not reasonable,” concluded the Health Professional Appeal and Review Board, because it did not address “whether it was appropriate in the circumstances for Dr. Chapman to place a DNR order on the patient’s chart and execute it in light of the fact that the (substitute decision maker) did not consent to it.”

The case remains before the college and the courts.

• When Mann Kee Li entered Sunnybrook in 2010 facing a grim battle with cancer, the 46-year-old Toronto accountant and father of two young boys wanted doctors to provide life-saving care in the case of a medical emergency.

Those wishes were further articulated in a power-of-attorney document and in a videotape statement, his lawyers said in an interview.

While doctors initially agreed to respect those wishes, Li’s family say physicians later reversed that plan by imposing a “do not resuscitate order” that left them “shocked.”

In an emergency hearing, a Superior Court judge issued an order revoking the “do not resuscitate” order and referred the matter to the Consent and Capacity Board.

On the morning of the CCB hearing, Li’s deteriorating condition prompted family to withdraw their pursuit of an order compelling doctors to treat him with heroic measures.

He died shortly after.

In a written statement at the time, Sunnybrook executive vice-president, Dr. Keith Rose, said: “When clinical teams determine that further interventions would have no benefit to the patient . . . ethically and legally, health-care providers are not obliged to provide interventions that lie outside the standard of care and would be of no benefit, and indeed may well cause harm to a patient.”

• When Elsa Anisio was admitted to Sunnybrook in 2007, family members were “emphatic that (her) wishes were that she receive full treatment with a ‘full code’ designation,” reads a 2010 lawsuit.

After sustaining a kidney injury from a cardiac arrest in May 2008, one doctor advised that “she should be allowed to die,” the statement of claim reads.

That suggestion was “vigorously opposed” by her family. Doctors “reluctantly agreed,” it says.

Anisio died the following month with symptoms of “extreme fluid overload” that damaged her internal organs and heart “beyond repair,” the statement claims.

The claim states medical staff failed to provide proper treatment to save her life, withheld information about her condition from family, and, in the case of three doctors, “deliberately failed to follow instructions of (her substitute decision maker),” and “misrepresented the actual condition of the patient in order to ensure that treatment would be delayed.”

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